Few hours post laparoscopy - no endo found - don’t know what to do now :(

[Dartmouth93]

Hey ladies...I’ve just got home into bed after having my first laparoscopy this morning. Ive been sick from the anaesthetic and feel sore but they’ve given me strong pain relief so I’m okay at the moment. The surgeon I had was different to the one I was meant to (both are general gynae not endo specialists). I was a bit unnerved when she spoke to me pre surgery because she just asked ‘Do you have a cyst?’ And then asked why I was having the procedure, “have you been trying for a baby?” And was a bit dismissive 🙄 After surgery the nurse read my notes to me because the surgeon never came to speak to me because they found nothing - no endo, no fibroids, no cysts etc and my ovaries apparently are normal (even though on a previous scan it showed I had polycystic ovaries). They have discharged me and have told me they think it’s just IBS and when I’ve recovered to go back to my DR if I’m still having issues to pursue if I have bowel issues. I asked the nurse if they would have checked my bowel and bladder for endo and she said they can’t see the bowel just by doing a laparoscopy so no, just my ovaries / womb etc. I’m surprised that they found nothing because my Nan, both aunties and cousin all have confirmed endo. I feel overwhelmed because I didn’t want to have endo because it’s a horrible chronic illness, but at the same time I feel frustrated that they found nothing wrong at all and are just saying it’s IBS. All of my symptoms occur when it’s my period and I have always had heavy painful periods so I don’t really know where to go from here. I feel silly and that people will think I’ve been a hypochondriac all of this time. Would really appreciate any advice xx

[Rjb_88]

So sorry you’ve had a rubbish day of it. If there is no endo found then as far as I’m aware it would be harder for it to just grow around the bowel area in isolation.

I would ask your GP for a referral to a department who could help with potential IBS, they may be able to help with those symptoms which could provide some relief.

I’d then look at managing the pain - a pain specialist could help if the GP is willing to refer you for it? If not then will you have a gynae follow up to discuss next steps? I find tranxemic acid is really good for controlling a heavy flow, plus mefenamic acid and cocodamol for pain relief, as well as a TENS machine. Then take fybrogel to help keep bowel movements soft and regular so they don’t get irritated during your period.

Sorry - just realised I have waffled on and written an essay! Xx

[Dartmouth93 in reply to Rjb_88]

Thanks so much for your thorough reply and advice. Before I got referred to gynae I had various tests to see if I was coeliac and tried different IBS tablets, as well as isolating food groups and cutting out certain foods to see if it would help but nothing worked, and the issues were always period related that’s why I’m adamant that surely it can’t be just IBS. I’ve also tried transanemic acid which does help thank you, but mefanamic didn’t have much effect on me. I now take diclofenac with codeine and lactulose which does help the most out of all of the combinations I’ve tried! Thinking of trying a TENs machine after reading about them as well so thank you I will defo try that xx

[saltna28 in reply to Rjb_88]

Excellent !

[Moon_maiden]

Hi

Keep a track of your symptoms still, especially if it runs in your family. I’ve heard stories that general gynae without experience of endo can miss it.

The bowel can be seen at lap, mine was, and in pouch of Douglas, and he also knew it was deep.

Maybe ask the hospital for a copy of your records. This may give you more information going forward.

Have a chat with your family that have had it, they may have some advice and give you support.

See how things go, you’ll know if something is wrong. Keep an open mind, if it’s something else and easy to deal with that would be great, much better for you.

I hope you recover from the lap ok.

[Rjb_88 in reply to Moon_maiden]

Hey Moon maiden do you still get pain around your pouch of Douglas area? I had it removed there at my first laparoscopy 8 years ago and I keep getting a shooting pain up there when I need the loo whilst having a flare up so think it might have grown back again!

[Moon_maiden in reply to Rjb_88]

Yep, everyday, pretty much abdomen and pelvic area after eating, activity and sitting. I think fibroids have something to do with it as well. There are a couple next to bowel.

Are you still under gynae or will you get a referral. It’s important not to let it take over.

[Rjb_88 in reply to Moon_maiden]

I’m still under gynae we’re doing medical menopause to see how that goes next as she wants to avoid more surgery if she can. At the moment though it’s all getting on top of me a bit but hopefully will get better with prostap soon!

[Moon_maiden in reply to Rjb_88]

Hopefully that will help you with symptoms. Have they done MRI?

I had my last Zoladex today. It was the easiest yet, but Emla cream had been on for two hours so really sunk in 😂

[Rjb_88 in reply to Moon_maiden]

🤣 thank god for little helpers!

Yes, I had an MRI earlier this year after having some precancerous cells removed so they did a check of everything on MRI too and thankfully didn’t see anything they didn’t expect!

[Moon_maiden in reply to Rjb_88]

That must have been a relief. Is it anything they’ll check on at any time, or one off?

I had a CT colonoscopy to check for bowel cancer couple months back, nothing showed. I didn’t expect it to, GP covering things.

Wish I’d had MRI before lap, hindsight is wonderful. The way things were done, were correct at the time though so no blame anywhere. Symptoms didn’t really hint at deep at the time. If someone’s symptoms were bad thoroughly recommend before a lap.

[Rjb_88 in reply to Moon_maiden]

A big relief! They’re checking again on Monday but it will just be an colposcopy examination and a smear to check they removed all the cells they needed to. It’s getting very complicated as I’m now seeing the colposcopy gynae for that and the endo specialist for the endo, the secretary this week didn’t know where to start 😅 it’s good that they are being thorough.

Yes, MRI is a great tool and it would help so much to rule anything out before a lap and for them to get a bit of a head start before they go in

[Moon_maiden in reply to Rjb_88]

Let us know how you get on. Tests get scary at times, but it’s good they are actively checking.

[Dartmouth93 in reply to Moon_maiden]

Thanks lovely, I’ve read that too which is what I’m thinking especially because of my family history. I will defo continue to keep a symptom diary and might get referred to a bowel specialist like they recommend because if they find something I have answers, but if not I can maybe ask to be referred for a second opinion to an endo specialist or pelvic pain specialist is what I’m thinking. I’m doing ok thank you I’m sore but have stopped feeling and being sick now which is a relief xx

[Moon_maiden in reply to Dartmouth93]

Glad you’re doing ok after op. You come across as feeling a bit better about it and sounds a good plan 🙂

When you keep notes a pattern is likely to emerge, food you’re eating, effects as well as pain symptoms.

Let us know how you get on.

[Abilou92]

Be persistent with going back to your GP, I was told for 18 months it was IBS and I was exaggerating the pain in my teenage years, then at the age of 19 I got referred to a gynocologist who found 2 cysts on my right ovary and endometriosis which I had treatment for.

Wishing you a speedy recovery from your op X

[Dartmouth93 in reply to Abilou92]

Thanks very much for your advice. I’ve had this going on for so many years which is why I’m so frustrated, so will defo push for answers. Thank you I’m feeling okay atm just sore and obviously can’t sleep given the time of my reply! X

[millieo12]

That sounds really confusing. You can definitely see the bowel/bladder via laparoscopy. I would recommend that you go to a endo specialist. Also get your surgery notes and reports. Continue to fight for your body when you know something is wrong xx

[Dartmouth93 in reply to millieo12]

Thank you so much, I know I’m so confused especially because the surgeon didn’t come and see me. I defo know something is not right and my gut feeling says it’s not IBS so I I’ll keep fighting for answers xx

[millieo12 in reply to Dartmouth93]

That is so unfair. Keep fighting xx

[Sal9956]

Hi, feel so sorry that has happened to you , this happened to me also but i did have an endo specialist. Ihad a laparoscopy a few months ago , but still feel theres something not right . My sister and mum also had endo . My advice to you is to find a good endo specialist , you know your own body and you need to go with your own instincts. It messes with your head so much too ! I really hope you find a way forward , keep pushing and keep fighting, dont give upyou deserve to be treated well , love and the best of luck x

[Dartmouth93 in reply to Sal9956]

Thanks so much for messaging lovely I’m sorry you’ve had a similar experience. What’s your plan going forward now that you’ve recovered from the lap? My bf is being so supportive and really determined to get answers so I feel lucky that I can fight this and hopefully get some answers xx

[Sal9956 in reply to Dartmouth93]

Hi , its really good you have that support and understanding. Fighting for what you need seems to be the only way , like i said search for a good endo specialist. Dont really know what to do next , 2 months since the lap and i still dont feel well , im on my third lot of antibiotics and im worried that having the ablation has caused damage , im pouring with sweat constantly, cant wee properly etc etc , im sure my problems lie with the bladder but he checked that , said there was nothing ! Just have to see if these antibiotics work first ! Let me know if you get anywhere! X

[Ixthus03]

I had period pain from a very early age and IBS symptoms and was just told it was normal. In my late 30s I went private and was told after the internal ultrasound that I had adenomyosis. I had a hysterectomy a year later as the pain was so bad. If I was you I would see an endo specialist and keep fighting for answers. Hope you find answers.

[Dartmouth93 in reply to Ixthus03]

Thanks so much for your message, most DRs day IBS to me and even though it’s possible I could have IBS I’m not convinced that there’s not other issues as well given the amount of symptoms and how bad it can be. A few ladies on here have mentioned adenomyosis so I will definitely look at finding a specialist I think as my next step x

[MMich15]

So sorry you’re going through this. Recovering from surgery is tough as it is let alone being dismissed and then discharged so easily.

As most have said you most definitely can see the bowels during a laparoscopy. It’s statements like that which will add to the confusion and also doubt that the doctors know what they’re saying.

In my experience once a specialist discharges you you’ll spend forever convincing a gp to refer you again, so as some have suggested I’d go the bowel specialist route to start with. Try and prompt them to do scans of your pelvis (which should include your womb) that way you’ll have those on your record should you need to access them to see a gynaecologist again. And to be honest, if the endometriosis involves your bowels you’ll need a bowel specialist involved anyway.

To me it definitely sounds like endo / hormone related - IBS wouldn’t flare up just around your periods then. But keep at it, I know it’s tough but you deserve to have your health looked after and better treatment, you shouldn’t have to live in pain.

One other thing - try and get your hands on all the surgery documentation - written report, pictures, video - anything. It’s good to have those for your own records, you could even email them to a specialist gynae and just ask the question: did they miss something? Some specialists are pretty good and responsive. If you feel comfortable you could even share some info here and see what the endo community says. I’ve had so many different gynaes look at my reports and pictures I half know what I’m looking at now compared to my first laparoscopy where it just looked a bloody mess!

Take care and hope your surgery recovery goes well x

[Dartmouth93 in reply to MMich15]

Thank you so much for all of your advice, I feel less overwhelmed now but couldn’t stop crying the day after my surgery because of all the emotions. And the pain from the trapped gas is awful! I think this is why I was so frustrated because I didn’t get the chance to ask my surgeon questions and although all of the nurses were so lovely, they don’t have the same level of knowledge about endo etc. My bf has been doing some research and we are thinking maybe an MRI scan is the next step as it sounds like it could show any issues with the bowel? The only thing the surgeon did was make some very brief notes, she didn’t take any photos or videos or biopsies annoyingly :/ xx

[MMich15 in reply to Dartmouth93]

So glad you’re feeling a bit better, it’s so overwhelming and takes time to get your head around it.

Definitely try and get a pelvic mri - ask if they will use dye too - it’s just injected around halfway through the scan, through IV and gives them greater visibility . I had one recently and it showed not only my endometrioma cysts on my ovaries but fluid in my Fallopian tube, signs of adenomyosis, and a nodule in my bowels. They can see your pouch of Douglas... pretty much the whole shebang 😂

I hope you get more answers and greater care soon x

[saltna28]

Ahhh that must feel shitty.. I know that feeling very well. I concur with bbart88 . Just wanted to add you shoould try aloe juice it heps with ibs and period pain flare ups. Keep strong and bebkind to yourself

[Dartmouth93 in reply to saltna28]

Thank you so much I’ve not tried aloe juice before so will give this a try x

[saltna28]

sciencedaily.com/releases/2...

[Dartmouth93 in reply to saltna28]

Thank you I was frustrated that the surgeon didn’t take any photos or do any biopsies, so maybe a biopsy is something I can have done at some point x

[EndoG]

Hey, I’m so sorry you’re going through this. I had the same thing and I thought I must be going crazy if there was no cause for the pain. I had a laparoscopy nearly 3 years ago where they found nothing, but I’ve kept going back to the GP and got referred to another gynae. That gynae diagnosed me with “chronic pain with no medical cause” but I kept pushing for more investigations.

Just got my MRI results backs and I have it everywhere.

You know your body, if IBS treatment etc hasn’t worked and you’re still in pain, keep fighting to be heard.

I’ve spoken to quite a few ladies who had nothing found on lap and then it was found a few years later.

You’re not a hypochondriac, trust yourself and your body. I know it’s hard to do when drs are certain there’s nothing wrong, but even if it isn’t endo you can’t just live with the pain with no help or explanation. Xxx

[Dartmouth93 in reply to EndoG]

Thank you so much, I couldn’t believe it when I read your reply. That’s exactly how I feel, that I’m going mad or have exaggerated my symptoms. When you first had a lap was it with a general gynae, and with your MRI scan was that with a specialist? Your message has made me feel so much better to tell myself to keep fighting for answers even if it’s not endo, like you say I shouldn’t have to put up with the pain and other symptoms all of the time xx

[EndoG in reply to Dartmouth93]

I’m glad I could help. 😊

It can be really demoralising and lonely going through this, even with a good support system, so feel free to message me if you just need to vent or chat about it!

Yes, first lap was with general gynae but he told me he’s done loads of laps to diagnose endo. I’ve googled him and he has no qualifications in it. He also told me there was nothing wrong with me as I was waking up and then left, leaving me very confused. I had to stay in hospital for hours longer than I should have so that I could speak to somebody who could tell me about the surgery in detail.

My MRI was done under gynae, but results were sent to the endo specialist team.

I actually managed to be referred to the endo specialist before I had my MRI, because one of my appointments was with a lovely gynae and he was convinced it couldn’t be anything other than endo.

I’ve found that taking somebody with you to appointments makes drs listen more btw. When I’ve been on my own they’ve told me it’s just depression making me think I’m in pain, or pain with no cause. My boyfriend comes in and they suddenly listen! It’s annoying that it has to be that way, but it really does help. Xx

[ber_dock]

Sending you tons of healing love Dartmouth.Just wanted to share my journey to show you Endo can get missed.

I have been in your position when I first had my laparoscopy.

They found a tennis ball sized abscess in my Fallopian tube but said there was no Endo at 17.

Also PCOS was seen in a scan.

He was a a hole and adamant I just have heavy periods,kept dismissing everything.He even cut one appts before to state he was late for golf.

They also said it might be IBS related and to be referred.He didn’t drain the abscess and just gave me antibiotics.

However,I was still in a lot of pain and struggling to work after the op.I didn’t get any help until I passed out at university while bleeding and a student GP said she thinks it Endo at 21.

By the time I got someone else to listen and see me the Endo (that was initially missed) had taken over my womb,tubes,ovary,bowel,bladder,pouch of Douglas,Endometriomas you name it then developed adenomyosis

I was in a bad way due to the first gynaecologist saying they found nothing.Now I wish I didn’t except his findings because it took so long after that initial laparoscopy to get further help.

I had deep infiltrating Endo aswel

The whole process made me question myself but I knew deep down that I wasn’t ok within my womb and the pain and bleeding just wasn’t right.

The gynae for the second lap was in Poole and it was a Endo centre at the time.

He spent over 7hrs and had to cancel other ladies operations to tackle me.

He said the previous surgeon missed it and then within those next four years it weaved all throughout my womb.

He also found both tubes completely blocked due to the damage of the left abscess.

I really do feel your pain and you just don’t know where to turn when it comes back normal.

Someone mentioned below,definitely keep a symptom journal to track what’s happening with your body.Period,bowel and bladder.

From my experience You will spend months to years trying to get help now due to the dismissal.

But it’s good you’ve gone through the bowel stuff before because that would be their next port of action now.

So do everything you possibly can to move forward because it’s a tough journey.

For now though,only concentrate on your recovery.Feeding your body good food,take some supplements,Magnesium salt spray for your thighs etc,Epsom salt baths when you can bathe.

The shoulder pain from the gas is a blighter I find that massaging the shoulder and drinking some fizzy water or anything fizzy will allow your body to burp the gas that’s traveling upwards.

Hang tight,you will get there.All the best to youX

[Dartmouth93 in reply to ber_dock]

Thank you so much for your reply xx I can’t believe how many women have told me that they’ve had endo missed initially, it’s so awful because if it wasn’t missed in the first place it wouldn’t have developed so severely. I’m going to keep a really detailed symptom tracker now and try and try to get to the bottom of it. Thank you for all of the tips I will definitely try these, and defo need to try something fizzy because this gas pain is awful! Xx

[ber_dock in reply to Dartmouth93]

Yes,tracking your daily symptoms may enlighten you to see a pattern somewhere,and will really help professionals see your bigger picture.

It really is a tough journey..but you’re not alone.Theres so many women that understand what your going through.

Yup,the gas moving out of your body can be quite sharp and painful.The burping really helps move it

Rest up well,and I wish you the best recovery

Xx

[Noodle1984]

There are other pelvic conditions other than Endo. If you’ve had heavy bleeding most of your life I would get a scan for adenomyosis. I call it Endos evil twin sister. I have both. They can check for it on an mri or by a skilled tech they can do a trans vaginal ultra sound. Adenomyosis is the same Endo implants but they get stuck inside the muscle lining of the uterus so there isn’t any way to get rid of it unless you have a hysterectomy. With the different scans they basically check to see how thick your uterus is. It causes a bulky uterus.

Also I would highly recommend getting a second opinion on the Endo. Maybe try and research for a specialist in your area. I had stage 4 recto vagina Endo and I had very little endo else where in my body. My surgery took 2.5 hours just to remove my rectum from my vagina on the inside. I almost ended up with a colostomy bag because of it. I also still have ibs but since my lap it’s a lot more controlled.

I am 35 and now have 15 chronic conditions. A lot of them compounded on top of each other. Once you get one auto immune condition you up the flood gate for more. If I could give any advice it’s to listen to your body. Don’t give up. I had a severe concussion for over a year before the doctors would believe me. You know your body best. 💕

[Dartmouth93 in reply to Noodle1984]

Thank you so much, I really do think we know our own bodies and that’s what I keep telling myself. I’m sorry that you have a lot going on and that you had to fight for answers. Years ago I was suffering with pain, soreness and irritation and kept getting told it was thrush by my doctors even though I was adamant it wasn’t, only to be told a few years later after being referred to various specialists that it was vulvadynia and dermatitis. The diagnosis made so much sense and although it can’t be treated as such there are things you can do to help and once I knew what it was I put these into practise and now I don’t have flare ups of it half as bad, where as it used to be a daily issue. My specialist at the time actually said the over use of thrush treatment prescribed by my Dr made it so much worse xx